Shining A Light on Lupus Nephritis
Shining A Light on Lupus Nephritis
September 26th - 3PM EST
Welcome to the #LupusChat recap! This discussion highlighted lupus nephritis. Together we explored the complexities of kidney disease due to lupus with rheumatologist, Dr. Laura Geraldino (@LGPardilla) in sponsorship with @AuriniaPharma.
Dr. Laura Geraldino is a rheumatologist and one of Aurinia Pharmaceuticals’ physician speakers as part of their “ALL IN” for lupus nephritis program. The tag #sponAurinia is indicative of our collaboration with @AuriniaPharma. As usual, both our topic and questions were created by us with the #LupusChat community’s interests and concerns in mind.
We went over some #LupusChat guidelines to help our conversation flow smoothly, then got our #LupusChat party started by sharing our name, where we are from, a little bit about ourselves, and what your favorite kind of sandwich is. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
I’m Jae Rivera, I’m “FROM” everywhere and nowhere, if we are getting fancy: Publix Crispy Chicken Tender Sub. If not, a regular PB&J (crunchy peanut butter & super soft bread. If it isn’t soft or fresh- TOAST IT!) #lupuschat
— PhillyzJamPoet (@theJamPoet) September 26, 2021
Welcome everyone! I’m Carly from Brooklyn. I’m a Patient advocate, researcher, and Co-host of #LupusChat. My favorite sandwich is a Turkey, lettuce, tomato, cheese with Mayo on a roll. Slaps!! #SponAurinia pic.twitter.com/mdkvorLVMk
— Carly by Nature (@SynceNerd_Carli) September 26, 2021
My name is Laura Geraldino. I’m a rheumatologist & have been taking care of people w/ lupus for the past 12 years. This is my first time on Twitter & I’m very happy to use this platform for this educational event. My favorite sandwich is the Cuban sandwich #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
Ivey Janette,Albuquerque. Surviving SLE and lupus nephritis since 1995. Favorite sandwich is turkey and Swiss on whole wheat or avocado and cheddar on sourdough. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 26, 2021
Hi… I'm Elizabeth from NJ and a #LupusChat co-host.
— Caring For Lupus (@CaringForLupus) September 26, 2021
My connection to lupus is through my daughter Miah, she was diagnosed with this chronic illness five years ago.
Her favorite sandwich is.. Peruvian chicken sandwich#sponAurinia
Hello! I’m Tiffany, your #LupusChat co-host from New York City. I was diagnosed with SLE in 2010 and lupus nephritis in 2015. Lately, my favorite sandwich has been a BLT(bacon, lettuce, tomato). pic.twitter.com/cGNzMbbAPA
— Tiffany (@TiffanyAndLupus) September 26, 2021
Then we began with question 1.
Q1: What is the function of a healthy kidney? What occurs when a person has Lupus Nephritis?
A1i) Kidneys are vital organs that help keep essential chemicals in balance, help your body remove waste from your blood, and control the amount of fluids in your body. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A1ii) Lupus nephritis is one of the most common and serious complications of lupus, which occurs when the immune system attacks the kidneys causing inflammation. The damage lupus nephritis causes to them can be permanent. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A1. Kidneys filter out water,waste and toxins from the body. Lupus nephritis happens primarily due to inflammation and damage to the kidneys from lupus. Including excess protein in the urine and edema in the body. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 26, 2021
A1 A major function of the kidneys is to remove waste products and excess fluid from the body #LupusChat #sponAurinia
— Caring For Lupus (@CaringForLupus) September 26, 2021
A1: According to the National Kidney Foundation (@NKF), when a person has lupus nephritis -- it causes inflammation (swelling or scarring) of the small blood vessels that filter wastes in their kidneys. #LupusChat
— Tiffany (@TiffanyAndLupus) September 26, 2021
A1iii) It is a serious health problem that, if left untreated, may lead to kidney failure, which may require dialysis or even a kidney transplant. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A1: The Kidney (when properly functioning) is our body’s filter. It ensures all waste is passed through the body properly. #LupusChat #SponAurinia
— Carly by Nature (@SynceNerd_Carli) September 26, 2021
A1. Kidney filters something but I forget what. My lupus nephritis causes my kidneys to tear easily causing internal bleeding. I get horrible lower back pain and will have UTI looking symptoms in the bathroom. Kidney infections sometimes come from those tears. #LupusChat https://t.co/ZQdM1VRkFC
— MikeyMoozer bIm (@MikeyMoozer) September 26, 2021
Once we had a clearer understanding of what lupus nephritis was, for Question 2 we explored the impact it has during diagnosis.
Q2: How often are patients with systemic lupus erythematosus (SLE) diagnosed with Lupus Nephritis? Why is it important to detect lupus nephritis early?
A2: interested to know. As an SLE warrior, I am fearful of developing Nephritis. I’m on constant watch of the potassium levels in my blood tests. #lupuschat #sponaurinia https://t.co/AP50ijHLQo
— PhillyzJamPoet (@theJamPoet) September 26, 2021
A2i) People with lupus have about a 50% chance of developing lupus nephritis. So that means about 1 out of every 2 people with lupus may go on to develop lupus nephritis. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A2. When I was diagnosed, it was caught almost miraculously early. The more I learned about LN, the more I realized how lucky I was. Researchers communicated recently that early treatment is crucial to preventing flares and further damage. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 26, 2021
A2: Finding and treating lupus nephritis early can help prevent serious damage. #LupusChat #sponAurinia
— Caring For Lupus (@CaringForLupus) September 26, 2021
A2iii) Routine urine and bloods are important to monitor people with lupus for signs of lupus nephritis. Because lupus nephritis causes permanent kidney damage, doctors want to catch and treat the disease as early as possible. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A2. Not often enough. It may take years and dozens of tests and kidney biopsies and doctors. It took 7 years before I finally saw a kidney doctor. DX'd me immediately with lupus and lupus nephritis. Getting DX'd early is essential to getting a treatment plan started. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 26, 2021
A2. Ddamage begets more damage” is the phrase I remember being used at recent conferences. Meaning that the more damage you have from any one flare, the more likely you are to have even more damage in the future. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 26, 2021
A2iv): Lupus nephritis can have serious consequences if left untreated. It can lead to high blood pressure, chronic kidney disease, and even kidney failure, as well as cardiovascular complications such as heart attacks and stroke. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
It can be tricky understanding the signs and symptoms of lupus nephritis, so we examined that more for Question 3.
Q3: Looking back, what are some signs or symptoms that you now understand were indications of kidney involvement?
A3. My hands were swollen for a long time before my dad forced me to go to the ER lol. And after diagnosis, for a while I had no idea that fatigue was a symptom of #LupusNephritis. It just didn’t come to mind that it could be related. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 26, 2021
A3i) In the early stages of lupus nephritis, there are very few signs that anything is wrong. In fact, some patients have no specific symptoms. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A3ii) The most common signs and symptoms of lupus nephritis are swelling, usually in the lower part of the body, like feet, ankles, and legs, and foamy or frothy urine. Some people also experience a more frequent need to urinate. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A3: Back when I was first diagnosed with systemic lupus -- my urinalysis repeatedly showed very low traces of protein, but not enough to alarm my rheum at the time. 5 years later I ended up being dx with nephritis. Wish my Dr back then had caught it much earlier. #LupusChat
— Tiffany (@TiffanyAndLupus) September 26, 2021
A3: Many people do not realize kidney involvement often causes no signs/symptoms! Why your rheumatologist checks your labs & urine every visit 🧪 #LupusChat
— Mithu Maheswaranathan, MD (@MithuRheum) September 26, 2021
A3. Swollen feet, ankles, and shins, UTI like symptoms, lower back pain, eye static/vision static, foamy/bubbly pee. These are all things I need to monitor now to see how fast my kidney failure is progressing thanks to Lupus Nephritis #LupusChat https://t.co/lRdNNBgnTc
— MikeyMoozer bIm (@MikeyMoozer) September 26, 2021
A3. Weight gain. I went frpm 155 UN 1997 to 225 in 1993. Edema in the legs. High blood pressure,even though it was hereditary. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 26, 2021
Managing manifestations of lupus can be difficult. For question 4, we discussed how lupus nephritis is monitored.
Q4: How is lupus nephritis diagnosed and what kinds of tests are used to monitor it? How often are these tests done and what are they looking for?
A4. As for getting a diagnosis, I had lots of blood work, urine tests, and a few ultrasounds over the course of 2 or 3 years. My nephrologist said he could do a biopsy, but felt strongly that my ultrasounds, blood work, and urine tests were clear enough proof #LupusChat
— MikeyMoozer bIm (@MikeyMoozer) September 26, 2021
A4: A urinalysis will check for the presence of red and white blood cells in the urine or high levels of protein. #LupusChat #sponAurinia
— Caring For Lupus (@CaringForLupus) September 26, 2021
A4. 24 hour urine collection. Blood tests to determine the BUN(blood uric nitrogen) and creatinine levels. Also possibly C reactive protein and/or ANA levels. And a kidney biopsy. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 26, 2021
A4: If your doctor thinks urinalysis/blood tests point to lupus nephritis they can request a kidney biopsy where they view a tiny piece of your kidney to determine the level of damage your kidneys are experiencing. #LupusChat
— Tiffany (@TiffanyAndLupus) September 26, 2021
A4ii) It’s important to talk to your doctor about monitoring for the clinical signs of lupus nephritis, specifically blood in the urine, which is called hematuria, and protein in the urine called proteinuria. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A4iv) In general, people with lupus should have a urinalysis as often as every 3 months to look for signs of lupus nephritis, while those with active lupus nephritis are often tested as often as monthly. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A4v) Your doctor will be looking to keep your urine protein levels below 0.5 grams per day. Having routine urine tests is critical because it can help your doctor catch lupus nephritis early and start to determine a treatment plan. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
We continued to examine the ways we can manage lupus nephritis care. Question 5 was next!
Q5: What are the goals of lupus nephritis treatment? How can patients and their care team collaborate to improve their quality of life?
A5i) The goals of lupus nephritis treatments are to reduce kidney inflammation, help stop the attack on your kidneys, and help get lupus nephritis under control. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A5: I think it’s important for a person's health care team to prioritize their patients' quality of life. Really listen to your patients to find out what their health goals are and work together to achieve them. #LupusChat
— Tiffany (@TiffanyAndLupus) September 26, 2021
A5. To ensure that the patient is able to be as healthy as possible. AND to monitor any changes to the kidneys and kidney function. Through medication,diet and lifestyle changes. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 26, 2021
A5ii) Catching lupus nephritis early can help prevent further damage to the kidneys—and that helps keep them functioning, with the goal of avoiding kidney failure. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
A5. (2/2) The only thing that would be better, is if doctors stop treating me like I am fragile to information because of my age. There is so much I don't know about what I am going through or going to go through because doctors tip-toe around giving me solid answers #LupusChat
— MikeyMoozer bIm (@MikeyMoozer) September 26, 2021
A5. Patients and their care team can collaborate to find the appropriate treatment, as well as ways to maintain treatment. It’s important that patients become knowledgeable to be able to self-monitor,so that changes can be caught in time. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 26, 2021
Finally came our last question of the day!
Q6: Can you share some tips and strategies for people newly diagnosed with lupus nephritis and some resources that can provide additional information, community, and support?
A6. Talk to your doctors! Make sure they get referrals to rheumatology and kidney doctors ASAP. If your insurance has a care coordinator for you,utilize them also for referrals. And of course, #LupusChat is here.
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 26, 2021
A6. I can’t say enough how much patient education is important. Read, read, read all about LN, talk to other patients (support groups are an amazing resource!). Lupus orgs always have educational sessions on Lupus that are very enlightening. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 26, 2021
A6. A tip would be keeping a symptom journal where you write little notes about how you are feeling and if anything about/in your body feels off. Write down the dates and times you feel 'off'. Consider noting exercise and diet, in case something is causing a flare up #LupusChat https://t.co/8rfZjst7bi
— MikeyMoozer bIm (@MikeyMoozer) September 26, 2021
A6: Here are some resources that can provide additional information and support for people diagnosed with lupus nephritis: #LupusChat #sponAuriniahttps://t.co/0RzljqoiB3
— Caring For Lupus (@CaringForLupus) September 26, 2021
Thank you for this chat. I did more observation than speaking this time around and I’m thankful to learn from all who contributed today. #LupusChat
— PhillyzJamPoet (@theJamPoet) September 26, 2021
Exactly! I was asymptomatic for 5 years before I started getting swelling and foamy urine. I attributed it to pregnancy(though I sadly miscarried every time) and my bodybuilding training. I was DX'd 2 years later. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 26, 2021
A6: To help raise awareness of lupus nephritis and to empower those living with the condition, ALL IN created the Lupus Nephritis Awareness Resource Kit with insights from members of the community. For more information, visit https://t.co/bfiy08n6nY. #LupusChat #sponAurinia pic.twitter.com/BbZ1KqyqKm
— Aurinia Pharmaceuticals Inc. (@AuriniaPharma) September 26, 2021
A6i) It is important to make regular doctor visits a priority – even when your symptoms are subtle or unnoticeable. Routine urine and blood testing by your doctor is key to helping you stay ahead of potential long-term kidney damage. #LupusChat #sponAurinia
— Laura Geraldino Pardilla (@LGPardilla) September 26, 2021
They're givin a master class on kidneys over at #LupusChat today ⭐️
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) September 26, 2021
Thank you for reviewing our recap. You can still participate in this Twitter conversation by clicking on the LupusChat icebreaker prompt and questions above and replying. Make sure to use the format "A1. This is my answer. #LupusChat" and add the hashtag to your responses.
Enjoy the rest of your day & remember to practice a little (or a lot) of self-care today.
It is absolutely okay to take time for self care.
You can’t do things well if you don’t feel well.